Successful Advocacy Strategies for when Doctors Say “Wait and See”: Standing Firm And Finding Joy As A Christian Special Needs Parent
As a podcast host and speech therapist, I’ve seen firsthand how persistent advocacy transforms a family’s journey. Today, I’m sharing some of powerful insights from my conversation with Erica Kingsbury, whose story of persistence in the face of dismissal led to answers, healing, and unexpected beauty and my own specific and actionable strategies that I’ve learned over the years.
When Your Concerns Are Dismissed
Erica’s journey with her son Jack began like many of our stories—with that nagging feeling that something wasn’t quite right. Jack was colicky, had feeding issues, low birth weight, and trouble sleeping. Most heartbreaking of all, “he cried nearly every day, all day long,” Erica shared, and nothing seemed to help.
When she sought medical guidance, Erica faced what too many of us have experienced: dismissal. “When I did try to explain to providers that this was really hard—his crying, the colic that didn’t stop—I was kind of dismissed as it was me, I was just depressed,” she told me.
This resonated deeply with me. I started this podcast precisely because I was dismissed when my son was little. There’s nothing more frustrating than having your concerns waved away with a “he’ll grow out of it” or being told “it’s a you problem.”
Red Flags Your Concerns Deserve More Attention Than “Wait and See”:
- Your child is missing multiple milestones, not just one
- The same concerns persist or worsen over multiple appointments
- Your child’s behavior or symptoms interfere with daily functioning
- You notice regression in skills your child previously mastered
- Your child shows extreme frustration with tasks other children their age handle easily
- Sleep, eating, or sensory issues significantly impact your family life
- Your child seems to be developing differently than siblings did at the same age
- Teachers, daycare providers, or family members have expressed similar concerns
- You’re spending excessive time or energy accommodating challenging behaviors
- Your parental intuition continues to signal something isn’t right despite reassurance
The Turning Point: Taking Charge
The pivotal moment in Erica’s story came when she realized: “They’re not going to tell me or do this for me or even give me the answers I need. I have to do it.” This shift in mindset—what Erica calls when “those mama bear instincts kick in”—changed everything.
For Erica, this meant taking the initiative to refer Jack to their state’s Birth to Three program. This decision ultimately led to the diagnosis of Williams syndrome, a rare genetic condition involving chromosome deletion that causes developmental delays and physical conditions.
“I think once you realize that you have to be the one taking charge, it kind of changed. It’s like a shift,” Erica explained. This is exactly what I’ve seen with the most successful special needs families—they stop waiting for answers and start actively seeking them.
Steps to Take When You Need to Be Your Child’s Advocate:
- Research state-funded early intervention programs
- Seek second (or third) opinions when necessary
- Connect with specialists directly, even without referrals
- Bring documentation of your concerns to appointments
- Request specific evaluations rather than waiting to be offered them
Finding the Right Support Team
One thing that struck me in Erica’s story was how different her experience was once she found the right specialists. After connecting with the Birth to Three program, Erica encountered professionals who took time to really know Jack.
“The people that we got in contact with were just so good,” she shared. “It’s hard not to fall in love with Jack. He’s a pretty amazing kid. They really just loved him and cared for him.”
The specialist who eventually mentioned Williams syndrome approached Erica with sensitivity and compassion. “She knew what she was doing. She knew that I was looking for answers… She was very loving and gentle with me when she told me about it.”
This highlights something I’ve learned both professionally and personally: the right provider makes all the difference. Finding professionals who see your child as a whole person—not just a collection of symptoms—is essential for both practical support and emotional wellbeing.
Qualities to Look for in Your Child’s Providers:
- They take time to observe and interact with your child
- They listen to your concerns without dismissing them
- They explain things clearly without medical jargon
- They see your child’s strengths, not just challenges
- They treat you as a valuable partner in your child’s care
Redefining Success on the Special Needs Journey
When Jack was diagnosed with Williams syndrome, Erica initially felt devastated. “I felt like my life was shattered,” she admitted. She had imagined a typical future for Jack—driving, college, marriage—all of which now seemed uncertain.
Yet as our conversation continued, I was struck by how Erica has redefined success. Rather than measuring Jack’s progress against neurotypical milestones, she celebrates who he is: “He is a bundle of energy, he is so much joy, he loves people, he never forgets a face or a name.”
This shift in perspective is something I’ve seen in parents who thrive on this unexpected journey. Success isn’t about achieving traditional milestones; it’s about embracing your child’s unique path and finding joy in who they are, not who you expected them to be.
“Life with him is not what I expected it was gonna be, and there’s a lot of hard moments still,” Erica acknowledged, “but gosh, it’s just beautiful. He’s an amazing kid.”
Reframing Success in the Special Needs Journey:
- Celebrating small victories that others might take for granted
- Finding joy in your child’s unique qualities and interests
- Building meaningful connections rather than checking milestone boxes
- Developing new strengths you never knew you had
- Creating a life of purpose, even if it looks different than you planned
From Struggle to Purpose
What inspires me most about Erica’s story is how she transformed her difficult experiences into something meaningful. Writing had always been her outlet, and when faced with Jack’s diagnosis, she again turned to writing to process her emotions.
As she shared her journey, she began receiving feedback that her words were helping others. Though initially she thought, “I would love to do that, but I am in the trenches of motherhood. There’s no way I can do this right now,” God had other plans.
This transformation from struggle to purpose is perhaps the most beautiful success story in special needs parenting. When we use our experiences to help others, we find meaning in the madness and purpose in the pain.
Turning Your Journey into Purpose:
- Share your story—others need to hear they’re not alone
- Offer the support you wish you’d received
- Look for opportunities to educate others about your child’s condition
- Consider how your experience has equipped you to help others
- Be open to God’s timing, even when it differs from your plans
Persistence Pays Dividends
What started with Erica’s refusal to accept dismissal of her concerns led not only to answers for Jack but to a completely transformed life purpose. By persisting through appointments, seeking alternative opinions, and trusting her instincts, she found:
- A diagnosis that explained Jack’s challenges
- Appropriate interventions and supports
- A community of other Williams syndrome families
- A deeper, more tested faith
- A platform to encourage other special needs parents
Her journey reminds us that persistence in advocacy isn’t just about getting answers—it’s about opening doors to an unexpected but meaningful path.
The Rewards of Persistent Advocacy:
- Appropriate diagnoses lead to appropriate support
- Earlier intervention often means better outcomes
- Finding your tribe of families who truly understand
- Developing confidence in your parenting instincts
- Discovering purpose within the challenge
Finding Community When You Feel Alone
One of the most valuable outcomes of Erica’s persistence was finding her community. After Jack’s diagnosis, she turned to social media: “I think I typed in like Williams syndrome on Facebook and then I went to Instagram and typed in hashtag Williams syndrome and my broken heart saw other moms with their kids that look just like my son.”
Seeing families not just surviving but finding joy gave Erica hope: “They’re smiling and they look whole and happy and okay, there’s hope.”
Even living in an extremely rural community (an hour from the nearest grocery store!), Erica has built meaningful connections through online groups, social media, and podcasts. This reinforces what I’ve seen repeatedly: when we persist in seeking support, we find it—sometimes in unexpected places.
Building Your Support Network:
- Connect with diagnosis-specific organizations and groups
- Join both local and online communities
- Reach out directly to parents on similar journeys
- Share your story honestly—vulnerability attracts authentic support
- Remember that quality matters more than quantity in relationships
A Message for the Persistent Parent
If you’re currently fighting to be heard about your child’s needs, please know this: your persistence matters. Your advocacy makes a difference. Your refusal to accept dismissive answers could change the trajectory of your child’s life.
As Erica’s story shows, the path from concern to diagnosis to thriving isn’t straightforward. There are detours, roadblocks, and unexpected turns. But persistence—fueled by love for your child—will keep you moving forward.
And on this journey, success might look different than you imagined. It might be found in a child who brings unexpected joy to your church congregation. It might be discovered in the strength you never knew you had. It might be revealed in the lives you touch by sharing your story.
Whatever form it takes, know that your persistence is paving the way not just for answers, but for a meaningful life—different than planned, but beautiful in its own right.
Daily Affirmations for the Persistent Parent:
- My concerns deserve attention and respect
- I know my child better than anyone else
- My advocacy today creates a better tomorrow
- This journey is reshaping me in powerful ways
- God is with me, even when the path is unclear
From one persistent mama to another,
Elyse
Connect with Erica Kingsbury
- Instagram: @erika.kingsbury
- Website: erikakingsbury.com
- Book: Not Alone: God’s Presence on the Path of the Special Needs Mom
Are you currently advocating for your child in the face of dismissal? What has helped you persist? I’d love to hear your experiences in the comments below.